When I was 24, I was diagnosed with Chronic Myeloid Leukemia (CML), a rare blood cancer with a median diagnosis age of 65 years old. Every visit to the oncology office reinforced this statistic. There were older individuals, and there was me. These experiences made me feel like cancer was irrelevant, and the disconnect eventually became a barrier to my treatment.
Because I had a hard time identifying with the cancer world, I’d often push my diagnosis aside. It was difficult for me to envision a future when I was so fixated on the present. Cancer forced me to drop out of school, focus on maintaining insurance and try to make life work for me instead of against me.
I had great friends and a caring family, but we didn’t talk much about my diagnosis or its effects in my life. Sure, there were the “how are things going” questions, but conversations with well-meaning people who had never experienced the impact of living with chronic cancer as a young adult had its limitations.
Part of that was my fault. Accurately translating thoughts and feelings of a cancer experience was overwhelming. Cancer conversations usually defaulted to, “Things are great.” The truth is that I was never really sure when things were great and when they weren’t, or which feelings were related to cancer and which were just a result of being a mid-twenty something trying to find his way in a world filled with mountainous obstacles.
I learned about survivorship issues the hard way. I struggled with the guilt of missing work for constant doctor’s appointments. I’d compensate by failing to maintain the latter. I learned about high-deductible insurance plans when I was informed at the pharmacy service window that one month of medication would cost more than $3,300 out-of-pocket. And I learned that medication could stop working when it finally did.
Two years after I was initially diagnosed with CML, my oncologist informed me that my cells had mutated and that my only treatment options were a clinical trial or bone marrow transplant. That was the moment I first embraced cancer and made the decision to run toward an unknown world of support and resources instead of away from it. But first, I had to address the obstacle that stood in the way.
The idea of cancer support seemed scary, like some sort of community service requirement or program that existed to supplement emotional inadequacies. I envisioned a cold room with concrete floors, fluorescent lighting and a circle of light-brown aluminum chairs. If there was a sign-in sheet or any standing up involved, I was out.
Through my participation in patient advisory boards and advocacy groups like the National CML Society, I began to meet other CML’ers around the country. I learned that cancer support wasn’t scary, that there was power in connection and that there was something special and cathartic about hearing someone say, “me, too!” There were no cold rooms, uncomfortable chairs or awkward interactions, just real people who encountered many of the same real life issues that I did.
I attended Baylor’s Young Adult Cancer Survivors Conference two years ago and met new friends that I still keep in touch with to this day. I met Heidi Adams, President and CEO of Critical Mass, a national nonprofit coalition dedicated to improving the lives of young adults with cancer, and immersed myself in a world of people who are changing the world, one day at a time.
In between it all, I learned a clinical trial drug brought me into a molecular remission. It was the perfect ending to a rocky and uncertain beginning. And it all changed when I finally embraced the process, gave in to the power of peer support and used my story to help others. That’s where you come in.
On Saturday, March 7, my wife and I will be at Baylor’s 2015 Young Adult Cancer Survivors Conference. If you’re a cancer survivor between the ages of 15 to 39 years old, a caregiver or family member, my hope is that you’ll come and be a part of a special day designed just for you. It could change your life and your cancer journey forever.
If you’re a young adult cancer survivor, caregiver, or family member, we encourage you to join us at at the 2015 Young Adult Cancer Survivors Conference. Contact Suzy Salomon at 214.818.8473 to register today.
This blog post was contributed by Justin Ozuna. Justin is the Digital Communications Manager at Critical Mass and a nine year cancer survivor. You can find him on Twitter at @theozunaverse or read about his cancer journey at theozunaverse.com.